A Negative PCR! Really?
Ok, so you may have been reading, I have been doing a bit of
an experiment; I have had an increase in my PCR test for the better part of a
year, and for the past four months, I have been taking Sprycel with a
tablespoon of Mother’s vinegar, in water, to see if a more acidic stomach
environment aid in better absorption of my medication; resulting in a decrease,
in my PCR. Any result lower than the previous test is what I hoped and prayed
for.
Well, low and behold, I just received an email from my
oncologist and it stated: “PCR is negative!” I read it three times and then
burst into tears. I cannot even believe it! I am uber excited, yet a bit
apprehensive; is it lab error, or a fluke? I have waited two and a half years
for that result and will be floored, if a little bit of vinegar, got me there!
For the moment, I am sticking with my theory; for some
reason or another, I developed low stomach acid, therefore the Sprycel was not
absorbing properly, causing my PCR to rise. In an artificially created acidic
stomach, Mother’s vinegar and water, it appears that my increased side effects
are in direct correlation with my decreased PCR.
Oddly enough, I also developed a mild case of Pleural
Effusion in my left lung; my oncologist said that he sees a direct correlation
between a negative response and PE; therefore, once I get over the PE and my
crappy case of bronchitis, he will try to keep my on Sprycel, and adjust my
dose to avoid further bouts of PE, for as long as possible.
He still feels as though Sprycel is the appropriate drug for
me, although we did briefly discuss Ponatinib; he believes that somewhere down
the line, I may have to make a switch and that Ponatinib may be the new drug of
choice. He stated that he would like to see more of a “track record” and more
statistics before actually making the switch and that if we can find a dosage
of Sprycel that keeps the PE at bay, then that is what we are going to do. And
now that I have a negative response, we are just going to have to wait and see
if we can obtain two in a row!
Of course, if I DO have two negative responses in a row, I
will be jumping for joy because I have had to incease my Sprycel intake, since developing
PE and bronchitis. It has been almost two weeks and the bronchitis is nearly gone;
I also believe that the PE is clearing, too. I cannot lie, I have loved the
Sprycel vacation, but I am ready to get back on the horse, so that I will remain
in Negative-land!
I frequently wonder about the medical profession. I often
feel that physicians can sometimes be lulled to sleep, seeing different
patients, with similar side effects, complaints and diseases, day after day. I wonder
how often a case or situation comes along, which makes them stop and really
think; “Is this a typical case, or does it need more of my attention?”
Typically, I am the one that brings up “out of the box”
ideas and thoughts, with my doctors, and often am stunned when they look
quizzically at me, like I am from the moon; and then responds, “You know, I never
really thought of that before. I will have to get back with you.”
My Family! |
I am not a medical doctor, and I am not a scientist; I am a
woman that lives with a chronic blood cancer. This cancer requires me to ingest
toxic medication, in order to stay alive. This medication does not have a
lengthy track record, as it has not been around for a long period of time. No
one knows it long term effects on other parts of the body, or whether or not it
will cause additional major health issues down the road. It is a new and
fascinating way to treat cancer and we all hope that someday, this will lead to
a cure. It is my goal, to live my best life, and to still be around when that
cure is discovered!
Cheers to Mother’s and my first Negative PCR!
I have been on Posatinib/Bosulif for 6 months. It has brought me to undetectable PCR-this month. I am thrilled. I have tried Sprycel and tasigna. I think this is the best drug for me. Best of luck. Watch those PE's -very dangerous.
ReplyDeleteDo you mean ponatinib. I will like to talk to you
DeleteDo you mean ponatinib. I will like to talk to you
DeleteThank you for posting!!! So glad to hear from some one actually on Posatinib; I imagine that I will be joining you somewhere down the line!
ReplyDeleteCongrats on you Negative PCR, too!
Michele
Thank you for letting us know how you are. I'm so glad you're PCR test results were negative. I'm sooo happy. Keep doing whatever you're doing. Love and Hugs to you!! Sandra in Sacto
ReplyDeleteThanks Sandra, I am still in shock!
ReplyDeleteMichele
Oh this is fascinating! I am thrilled with the NEGATIVE result....... lovely :) I also wonder whether this would be something that should be looked at when there is a slow or lack of response to a drug.. Good for you for thinking outside the box - and for posting this. Thank you!
ReplyDeleteAnnie
No kidding, Annie; I believe it is worth looking into!
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